The experts say well-meaning parents often say too much, too soon to their children about the risks of food allergies. The result: more and more kids with allergies – and anxiety. This special report, first published in Allergic Living magazine in 2008, explores the line between caution and fear.

YOUNG DEVON used to love food, but no more. Following some upheaval in her 8-year-old life – a move last fall from Toronto to scenic Woodstock, New York, and an allergic reaction in a restaurant in the new town – Devon has developed serious food “issues”.

The girl, who’s allergic to peanuts and tree nuts, no longer even trusts her mother’s cooking. Daily, she pulls food packages out of the garbage to triple-check the ingredients for allergens. She’s so fearful about what fellow classmates might eat that her mother, Anna Ross, must physically remove her daughter from the car when taking her to school.

“It’s a drama, it’s tears, it’s dragging her up the walkway and handing her off.” Sometimes, the girl will wear her gloves all day to avoid touching anything in the classroom.

But Ross doesn’t attribute her daughter’s obsession only to the restaurant reaction, which was moderate (swelling of the throat and lips), or the move. These were contributing factors. Ross suspects it was her own efforts to educate a new school community and classmates about the seriousness of food allergies and the need for vigilance that got the wheels churning in her daughter’s head.

During a quick session in front of Devon’s class, curious kids put up their hands to ask: “Could she die if she ate a nut?” While Ross played down the possibility, Devon, at the age of 8, was listening with a new attentiveness. Today, the girl expresses a fear of dying and is seeing a child psychologist, while her mother suffers guilt about whether she said too much in front of her.

In an e-mail Ross sent to Allergic Living she asked a heart-wrenching question: “should an 8-year-old have to fear her mortality like that?”

She is not alone in her worries. Increasingly, parents are noticing that what they say and do to manage a child’s food allergies, even their very demeanor on the topic, affects the child’s sense of security – or lack of it.

Through our e-mail registry, Allergic Living asked parents how they spoke to their food allergic kids about anaphylaxis, and if they had concerns that they might be scaring them, in addition to teaching them precautions.

The topic clearly struck a chord, with over 70 responses arriving in a few days. Many spoke of the tough balancing act of instructing a child to always be vigilant about avoiding allergens, to not eat unknown foods, to have an auto-injector at the ready at all times, to communicate concepts such as cross-contamination[1] in food preparation, but not to tip the child over the edge into fearfulness and take away the joy of being a kid.

Unfortunately, the balance quite frequently does tilt to anxiety: the mother of a girl the same age as Devon referred to her peanut-allergic daughter’s “fear and extreme sense of self-protection.” Several parents spoke of turning to the “fear factor” about anaphylaxis to drive home to young allergic kids that they have to be careful around food. But conflict about the impact was evident.

One mother related that her son was so “stressed out” about his peanut allergy that she had him tested for an ulcer at the age of 9 (he didn’t have one). Kimberley McNabb of Collingwood, Ontario, spoke of her 10-year-old’s refusal to eat even safe foods at friends’ homes. While she thinks nothing is more important than being prepared to deal with a serious reaction, she added: “my hope is that I haven’t instilled a fear in my son that in future only adds to the stresses of the risk of anaphylaxis.”

When it comes to food allergies,“there is so much anxiety,” says Dr. Zave Chad, an Ottawa allergist and president of the allergy section of the Canadian Pediatric Society. He notes that there does not appear to be nearly as much stress among children and parents coping with asthma – and yet there are far more deaths caused by that disease than by anaphylactic food reactions.

Next: Loaded terms and miscommunication

Beth Goldstein, a social worker in private practice who provides counseling for families with food-allergic children, expresses concern that anxiousness surrounding allergies can affect children’s confidence and how they’ll live their lives.

“If they are afraid, I’m not sure they will reach their potential, they could hold themselves back from opportunities.”

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SO HOW did we reach the point where the manner in which we teach children about one serious condition can lead to a level of anxiety that’s not healthy? Experts think it may start with how we explain food allergy to others. “If you listen to the way some parents talk,” says Laurie Harada, executive director of Anaphylaxis Canada, “they say, ‘this could kill him’ or ‘bringing a peanut butter sandwich to school is like bringing a loaded gun.’

“It has great visual effect, but often the child is within earshot, and is that the image you want your child to have?”

Chad agrees that such terms can be harmful. “Back in the early 1990s, in the days when people thought food allergies were ‘in your head’ and people were not buying into the seriousness, discussing the potential for severe reactions was very useful,” he says. “It galvanized the community, it got people working on this.

“But I think the pendulum has now swung a little too far the other way.” He says emphasis on severe reactions can frighten parents and that affects how they communicate with the community – and their children. “Kids pick up on the anxiety of parents extremely quickly,” Chad says. “The parent who is over-anxious is not helpful to their child.”

Jill Fraser became so stressed about her son’s allergies that she lost sleep, felt tension in her shoulders and jaw, and stepped up control over her allergic child, who was not sleeping well either. Fraser’s son, Harper, was found to have a milk allergy, then later, at 18 months, a peanut allergy.

With the peanut diagnosis, Fraser cried at the pressure she felt to keep her little boy safe. At first, she wouldn’t even take Harper down the supermarket aisle where peanut butter was on the shelf. Fraser had more reason than most to worry; a childhood schoolmate had died from an accidental exposure to peanuts.

But she even became worried that the boy might react to other major allergens: from shellfish to sulfites to stinging insects. For a time, Harper was afraid of playing in the grass because of bees. She was trying to control her son’s every movement.

“On the swing, I’d say, ‘careful Harper’ or when he was going down a set of stairs ‘careful Harper,’ running around the yard ‘careful Harper. “I over-controlled regular things to make up for this monster (anaphylaxis) that I could not control.”

Talking to a psychologist helped, causing her to realize that she was over-compensating. Fraser is still vigilant about managing her 4-year-old’s allergies, but feels a greater sense of calm. Both she and Harper are sleeping better, and she speaks to him in a more relaxed fashion.

For the first time, she’s even hired a non-family member to care for her two kids while she’s at work. Her anxious parenting had caused some tension with her husband (whom she found “too care-free”). But now “we are functioning better. We have more common ground with our strategies for parenting.”

Next page: The ever-present fear of death

WHAT CAUSES high anxiety in parents, which gets passed on the kids, is the fear that a child might die from an anaphylactic reaction. Such fear can be so visceral that it puts the primal need to protect into overdrive. But just as physicians are encouraged to “heal thyself,” some parents need to learn to “calm thyself ” – and look more closely at the allergy facts, which offer some reassurance.

First, despite a doubling of the incidence of food allergies in North America in a decade, deaths from anaphylaxis are still rare. (Thanks in part to preventative measures.)

Second, Chad says allergists now have improved knowledge from fatality studies of the profile of the person at a higher risk of a life-threatening reaction – and it is not every person who tests positive to food allergies. Those with asthma, especially adolescents, fall into a higher risk category, and a previous anaphylactic reaction also increases risk.

The statistics make Chad’s point: a U.S. study published in the Journal of Allergy and Clinical Immunology in April 2007 examined 31 food allergy deaths and found that most who succumbed were again teens or young adults,most of whom were not carrying auto-injectors and had eaten away from home. In Canada, a study published in 2001 reviewed deaths in Ontario from anaphylaxis to food over the previous 14 years. There were 32 fatalities, mostly among teens and young adults who also had asthma, and peanuts and tree nuts were the allergens most often implicated.

In all the cases for which medical history was available, the person had also been asthmatic. As a prevention strategy in children who do fit the at-risk profile, Chad opts for “superb asthma control,” as well as vigilance about good allergy practice: carrying epinephrine at all times, allergen avoidance, label reading and frequent hand-washing.

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BUT HOW can parents avoid this undue anxiety and instill caution without fear?

“We have to acknowledge that there are no easy answers,” says Dr. Jane Garland, a child psychiatrist and professor at the University of British Columbia, who heads the B.C. Children’s Hospital’s Mood and Anxiety Disorders Clinic in Vancouver.

But she says food allergic kids will take comfort if they know that the adults around them – parents, daycare workers, teachers or coaches – are well-informed about managing their condition.

“That’s their safety net. Then they feel that the burden is not all on them,” she says. “That really reduces children’s anxiety – ‘somebody’s in charge here and knows what to do if there’s a problem.’”

Garland thinks getting a realistic estimate of the level of risk from an allergist is also a good idea. If the child does not fit the profile of those at greatest risk of an anaphylactic reaction, let him know, as that should offer comfort. If the risk is high, let the child know it’s still very manageable, and that the “safety net” is in place. She says a big part of child anxiety management, in any circumstance, is knowing the likelihood, and having the skills to deal with it.

Anxiety, unfortunately, is common in our modern world, even before food allergies are taken into consideration. Fifteen per cent of children are anxious just by temperment. “Since allergies are common and anxieties are common, there are going to be lots of kids who have both,” Garland says. Yet anxiety does have its place.

Lynn Miller, a psychologist and assistant professor at UBC, notes that it can make us aware of a danger or threat: historically it alerted us to predators in our environment, such as wild animals.” But what it won’t help is the child trying to manage food allergies.

“The problem is when you’re afraid, you have less ability to think straight,” says Miller, who specializes in childhood anxiety. This is because the physiological reaction to fear is to prepare for flight: blood drains from the brain to the muscles, the stomach fills with acid.

This state doesn’t allow a child to size up the risks accurately in a new environment, such as on a field trip or at a new friend’s home.

What the parent wants, she says, “is a child who’s calmly assessing the situation rather than one who’s frightened and unable to assess properly.” Nor will such a condition help in dealing with an emergency, asking for help or administering an auto-injector.

Miller says “cautiousness” is the place where kids can best deal with their allergies. The parent who stays attuned should be able to spot the difference between caution and excessive anxiety.

Children with the latter are likely to have physical symptoms: stomach aches are the leading indicator, followed by headaches, and clinging or not wanting to go to events. Anxiety disorder associations caution to watch for daily and uncontrollable worrying over several months.

Miller says learning some responsibility to manage allergies independently can help kids to arrive at caution over fear. Once they’re old enough, she suggests that participating in sleepovers (at homes with fully informed parents) is a good way to boost their confidence.

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IT’S USEFUL for parents to be aware that there are certain ages at which kids’ brains are growing rapidly, giving them an increased capacity both to think – and to get anxious.

“One of those times is between 7 and 8, when many kids develop a lot of worry about germs, disasters and things going wrong,” says Garland.

She sees Anna Ross’s daughter Devon as a good example. “In her case, it has to do with food, but at that age, she might have developed the same thing around something else.”A later brain growth spurt comes just before adolescence (which Miller notes can vary from age 10 in girls to age 14 in boys).

Next Page: Talk About ‘the Likelihood’

Many parents told Allergic Living that they impress upon young children the risk of dying from an anaphylactic reaction. The intent is to get the child to pay attention and manage the allergies, but several experts cautioned against such language.

“I don’t think it’s that helpful,” says Garland. “I can think of very few situations where such kids need to be told – ‘you could die from this.’ It’s one of those phrases that is terrifying for anyone at any age.”

Instead, she suggests saying: “You have to be careful because if you have a reaction to this food, you might not be able to breathe. That’s different language.” A young child can’t grasp the concept of death, she notes, but “not being able to breathe is more meaningful because people need to be able to breathe to live. It’s put in the positive framework.”

Some parents said they use the “you could die” approach with young kids as a type of pre-emptive parenting: trying to instill a fear of anaphylaxis early to keep a child vigilant during the rebellious teen years.

Garland says that strategy can backfire, since kids re-evaluate “almost everything” as teenagers. She cautions that if a teenager decides you’ve been too dramatic in your portrayal of the risks, “the parent’s credibility goes down.” Better to update the information you’re giving to a child according to the age, stage of development and level of understanding.”

To speak to Garland, the co-author of a book called Taming Worry Dragons, is to appreciate the information overload in some young brains. “We see kids who are terrified about climate change. They say, ‘The icecaps are going to melt, we’re going to be flooded’. They’re worried about ‘we shouldn’t be driving in the car – because we’re poisoning the atmosphere’. Earthquake drills in school make them afraid of earthquakes.

Children hear these things and it’s up to the adults to really put it into context with ‘the likelihood’. That’s a big part of anxiety management: ‘How likely is it to happen?’And if it could happen, do you have the skills to deal with it.”

Kids who get so stressed about allergies that it interferes with their ability to sleep or eat or socialize can learn skills for anxiety management. With those, Garland says, “if they start to worry they know how to calm themselves down physically or to distract themselves.” (These skills include breathing exercises, and someone to talk to who is reassuring.)

She notes the positive as well: a great number of children do a wonderful job of managing their food allergies. She thinks we should also listen and learn from them.

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MATTHEW Lindsay is such a kid. The 11-year-old has asthma and allergies to peanuts, tree nuts and scallops, and has been through his own bad bouts with fear. With his mom’s help, Matthew is learning to not be fearful, and offers this counsel for parents: “Don’t freak out. Don’t make this a matter of ‘you make one mistake, and you’re dead’.

“Make your children understand, but don’t scare them. Just explain to them that they are allergic and it can be dangerous but if you’re careful, read ingredients and have your EpiPen, you should be fine,” he says.

And if some parents have inadvertently fomented fears, others have been excellent at setting the example.

Next Page: Learning to Cope for Life

When Daniel Burrow read about teenager Sabrina Shannon’s[2] tragic death from anaphylaxis, he became frightened. Daniel, who was 10 at the time, began having imagined reactions.

His mother, management consultant Helen Handfield-Jones, recalls that she and her husband would speak calmly to the boy, who is allergic to peanuts, tree nuts and lactaid pills, asking whether he had eaten anything suspicious and assessing the risk.

“We would say, “You say your lips feel funny, but do you have any other symptoms? Does your stomach hurt?” If there were no other symptoms, they would tell Daniel it was likely a false reaction arising from fear. They assured him that they would watch closely for other symptoms.

Right in line with the “safety net” approach, his mother would say, “let’s also check to confirm all our backup protection is in place: we have two EpiPens, we can get to a hospital if we need to.” The anxious phase lasted about eight months. Three years later, Daniel is doing much better and feeling more confidence. “I’m in a good place,” he says.

That good place is where allergic kids want to be. Should a child have to fear his or her own mortality? No, they shouldn’t. The road to reducing fear and anxiety may be winding, but the experts say to stay with the journey and most families will get past the bumps and detours. Still, if you and your child are finding your lives too affected by allergy stress, don’t be shy about seeking the help of an anxiety expert.

Garland reminds that some kids will have the temperment that’s predisposed to worrying, “and if we can give them some coping skills as a child, they can cope with anxiety better throughout life.”